The Andhra Pradesh Government has been urged to bring a group of rare genetic disorders known as Lysosomal Storage Disorders (LSDs) under the Arogyasri health insurance coverage as the treatment was expensive and beyond the reach of the common man.

LSDs are a group of over 45 rare genetic disorders caused by deficiency of specific enzymes in special compartments (lysosomes) of cells. Six of them can be treated by Enzyme Replacement Therapies (ERTs).

They occur in about one in 5,000 live births and around 300-400 patients in the country were diagnosed with treatable LSDs.

With February 28 being observed as ‘Rare Disease Day’ worldwide, the Lysosomal Storage Disorders Society (LSDS) in India has decided to conduct multiple workshops across the country during the month to create awareness on the life-threatening LSDs, its president, Prasanna Kumar Shirol, told reporters here.

He said patients suffering from LSDs do not have access to treatment and only government intervention could save them.

Dr. A. Radha Rama Devi, senior consultant paediatrician and in-charge genetic division, Rainbow Hospitals here said one of the major challenges was delay in diagnosis due to low awareness among medical practitioners, which could lead to various complications. She said government support was crucial in managing these patients.

Dr. Lokesh Lingappa, consultant paediatric neurologist, Rainbow Hospitals, said the workshops were aimed at creating awareness about the rare disorders among the people, media and medical fraternity.

No doubt is this is a wonderful idea.But impracticable.Even advanced countries like U.S.A are thinking twice regarding medicare. Arogyasri program itself is a burden on the state. Even basic coverage for health is denied to senior citizens. Only corporate hospitals will get benefited by adding new exotic treatments for a few rare diseases at the expense of a majority of population.

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Workers carryingout repairs to Visakhapatnam District Collector's Office, as it was damaged in Cyclone Hudhud in 2014 October. The majestic heritage building was designed and built by Dutch engineering company Gannon Dunkerly in 1865 and completed by 1914. Photos: C.V. Subrahmanyam